A Dream, A Wish, A Hope

*peers in nervously …*
*clears throat*

The Caged Bird: ME Awareness May 2014

Caged Bird

Okay … so, obviously, I’m the Caged Bird and … well, this is what I’ve done for ME Awareness Day/Week/Month (and beyond!).

Basically, while I’m rather shy these days (and somewhat poorlier than I used to be many moons ago, having always been mod/severe but progressively worse with it since the start), I have pushed to painstakingly make this video over a period of time for a JustGiving page to try and raise more funds for the amazing peeps at Invest in ME.

So, without further ado, I present …
A Dream, A Wish, A Hope

Formally, this video was Unlisted, meaning it was only available via direct link to the video itself. After several months and a response I never expected, it is now available to the public via Let’s Do It for ME’s YouTube channel, in the hope of raising even more desperately needed funds for Invest in ME!

(With the end bit regarding me freaking out chopped off, obviously .. though, believe me, my hair is not grey for no reason!)
*bites non-existent nails ’cause TCB can’t grow them!*
The link to my JustGiving fundraising page is here:

So, please, do help if you can! I’ve met my target and then some already, as people have been so wonderfully generous thus far, but every single donation helps, especially if I manage to go over my target by a 1000%!

Thank you so much for reading,
watching and especially donating.

Tasha & Tara’s ME Awareness Video 2014

For ME Awareness Month 2014 Tanya’s two youngest daughters Tasha (15) and Tara (14) decided to make a video to try and explain to none sufferers what it is like to live with this illness.  It took them some time to decide how to film it, they wanted to do something that didn’t come over as self-pitying or frivolous.  They wanted to make an impact and to raise awareness and the very urgent need for funding towards biomedical research.

Tasha & Tara ME introduction

Together they came up with the concept of standing in front of a blank wall and silently hold up signs to convey their message.  They asked Sarah Louise “Feather” Jordan for permission to use her song to play throughout their video as they filmed themselves holding up the signs.  We feel the song compliments the girls vision of their video perfectly.

Both girls suffer moderate/severe M.E. which means they spend most of their days housebound, they have to plan how to use their energy as they have so little and the rare trips out have to be carefully orchestrated so not to make them too ill.

To make the video the girls spent hours with sheets of A4 paper and black sharpie pens creating the signs to hold up. This process took many hours and ended up with the whole family getting involved. This was because it took an awful lot of energy for the girls to do just one sheet as each word had to be coloured in to make it bold enough to be visible on the screen.

This is the finished product, which we hope you enjoy.  Please feel free to share this video far and wide and help us to spread the message that M.E. is a severe, chronic, debilitating illness that affects so many of our population.  Together we can make a difference!



Sarah’s Song
Lyrics by Sarah-Louise “Feather” Jordan
 If I could conjure colours
As I live and feel and think
Then love would shine like amber
And my joy would be bright pink,
My faith would be deep copper
While our heartbeats shimmered red,
The walls that keep me prisoner
Would be gold with stars instead,
I’d turn my slate-grey sorrows
Into oceans of soft blue
And everything that matters most
Would be all the shades of you,
So everywhere my palette
Could be blended with your own
As we keep painting something
That the world has never known
On a canvas that’s unfurling
With each breath our lungs have kissed;
We’ll paint the new day dawning
With its dew and clearing mist
And then we’ll daub a message
On the blank space of the sky
Which reads “we’ll live with beauty
Til the moment that we die


These lyrics were then set to music by Dave Freer and Peter Allan Singer.  The song can be purchase from any of the links below and all proceeds go to Invest in ME Research.

thank you